Cancer Facts We Learned From Survivors, Not the Doctor

by GregP_WN

WhatNexter "Cllinda" recently posted a question to the WhatNext Community that asked "What one piece of advice did you gain from this site vs. your doctor? The reason I asked this is because of this site talking about ports. My doctor never mentioned it and I would not have known if it wasn't for this site. Once I asked for it, he agreed to let me have one. But I had to ask for it. So I was wondering what other people have learned about here." 

Cancer Facts We Learned From Survivors, Not The Doctor

These are some of the things that WhatNexters say they learned from the WhatNext site.

"I didn’t know about Claritin helping with Neulasta bone pain until I was told here for one thing. I also only met 1 person with my dx prior to this site & that girl was dying. It is helpful to know that there are others who have survived longer than me so far."-Jalemans

"I learned on this site that I wasn't alone in being ignored instead of diagnosed. For better or worse, that seems important."-Geekling

"Nobody warned me about damage to teeth with radiation, and mine are in bad shape now. Another thing nobody has mentioned to me is heart damage, but I would've still chosen radiation to stay alive."-BarbaraInBham

Osteonecrosis Of The Jaw

"I also was never told that radiation might cause heart damage. I was told that Herceptin could cause it, but so far so good. I also never knew that so many people get second opinions. It never occurred to me. I just wanted the cancer out of my body. I was never told that some of the side-effects could be permanent. I doubt that it would have changed anything that I did, but it would have been nice to have been forewarned. At least WhatNext has given me suggestions to try that might help."-Beachbum5817

"I didn’t know you could get mouth thrush or that Magic Mouthwash could help. The week after my first chemo was awful because my mouth felt like sandpaper. I too had no idea about Claritin for Neulasta and spent the first dose curled in a fetal position too much in pain to cry or even talk"-Msesq

Magic Mouthwash

"I learned to not just take the doctor's word as the word of the gospel. Question them and get the why's answered. I ask questions until I'm happy. I used to just say OK, and go with it."-Hardygirl

"I learned, among many other things, that my doctors were thorough in what they told me about possible side effects of breast radiation to my left breast. I also learned that if I ever need chemo again, I should drink lots of water during that period (something my oncologist or onco nurse hadn't told me at the time). I learned that this site is an excellent source of support and info."-Carool

"The first time I had cancer in 1994, I didn't know the questions to ask or didn't think to ask questions, but either way I would have loved to have had a site like this to go to. My doctors were great, but I didn't know about side effects of chemo or radiation at that time. I also lost my teeth, and know have dentures, (which by the way aren't the best- had I known info I'd had implants done in 1996,) now my gums will not accommodate implants, ok, other side effects were tolerable. In 2014 when I was DX again, I did ask the questions and did find this site and it has been helpful.. knowing other people and their issues, In 1994 I didn't get a port for chemo, but in 2014 they put one in. I agree with all who say over and over, that we need to be aware of our own bodies and ask questions to our doctors. If we don't let them know what's going on, they can't help us. Good Luck to all, and thanks for this site, and I'm glad I found it and to all on here!!-junie1

"I found out that so many are going through the same thing and it somehow helps to know your not alone.They have given me so many tips with this chemo brain, can't remember them all.Just so thankful I found this site."-fluteplayer

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"From the doctor, you get the clinical side. From here you get the "real" side. Anytime I got information from here I always checked with my doctor to make sure for my case it was fine for me. Some of the things I got from here like the Claritin for the Neulasta my doctor said to go ahead and try...that it couldn't hurt. But there were other things that I got here like the black cohosh for hot flashes that my doctor said not to take due to my type of cancer. So check with your doctor before adding anything."-akwendi

"Self-advocate, get educated and got to medical records at your doctor's group and get copies of lab results and ask questions if you need to. They never told me I had multiple points of origin. In my mind, that was the deciding factor for a double mastectomy, because ALL the tissue was suspect. It didn't matter that it was early stage, or that I had ample tissue to just do lumpectomies. The medical records gave me the facts, ALL the facts, which my doctor hadn't. Then I was able to make an educated decision. I'm 7 years cancer-free and it was the right decision to remove everything."-hikerchick

Medical Records

"I would have waited a full year after radiation to have my breast reconstruction surgery. I believe the surgery would have been more successful and the result less problematic. I have one lower soft breast and one higher hard one. Now, I m experiencing burning of the skin on my neck and across my chest. I learn more from the articles and websites posted here. Doctors are not teachers."-MariePierre

As you can see there are lots of things you can learn from the Community of patients, survivors, caregivers and their families at WhatNext. There is a saying that goes "you just don't understand if you haven't been through it". And that is very true, for many things in life, so when it comes to cancer information, there is no better place to get it than from the people that have been through it or are still going through it. 

What things have you learned about cancer, treatments, side effects, coping with them, etc. that you didn't learn from your Doctor? Please share in the comments to help those just getting started. 

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